It happens once or twice a week that the telephone rings around 10 in the evening, and upon answering it we hear first a quick moment of silence and then a voice that blurts out, “Hi, Mommy.” The voice is not as clear as a normal voice but it resounds in our hearts with warmth and love. Then the conversation begins: “Hi, Naama, how are you?” She always responds that she is fine.
Naama, our severely handicapped daughter, has a limited amount of vocabulary that is understandable. She inquires about everyone in the family, and following that, asks about the many babies that are continually being added to the family roster. It is difficult to maintain this conversation for a long period of time. We often run out of things to say to her and we know that she is yearning to speak with us for as long as possible. Her answers are primarily either yes or no. We often wonder why it is that she has the ability to say some words and yet cannot speak in a conversation normally. She is not able to make sentences—all responses are one syllable. It is often painful and disturbing to realize that she is so limited in what she is able to say. We basically do all of the talking. At least when we are with her she is able to point to her communication board and show us the symbols, which makes it much easier for us to communicate with her. The telephone is much more complicated for her, and yet she does not seem to complain. Upon telling her that we have to go (which is painful for us), she will immediately give us a kiss on the phone and say goodbye.
There are so many lessons that all of us could learn from Naama. We used to worry when, as a child, she would be with us in the park, watching other children on the swings. We wondered why she wasn’t shouting and yelling that she also wanted a turn. (We would frequently lift her and hold her so that she could have a chance.) We would watch her observing our other children on their bikes and wonder what she must think about the fact that she was not able to do that. What in her life wasn’t really restrictive? There was nothing that she did where she wasn’t totally reliant on someone helping her. Nevertheless, she always seemed happy. The things that were our concerns were not hers. The fears that we had that she would feel lonely and isolated were in our minds alone. Although we have always been on the same page as to the best way to raise our family, with Naama as a valuable addition to it, and we tried including her in practically everything we did, it was Nina who always worried about how sad it must be for her, and Mordechai always reassuring her that Naama is happy with her life. She would only not be happy with her life if we give her the impression that she is missing something. Never has she made us feel that way. As difficult as it might be to believe, Naama is content and smiling most of the time. Her life, in the environment in which she has lived and where she lives now, ensures us that she feels completely happy and satisfied practically every day. How many of us are able to say that about ourselves?
How many of us can look at our children and are content with the way that they are today? Somehow, everyone seems to be striving for more. Particularly in the case of parents who have children with special needs, there comes a time (hopefully at a young age) when they learn to accept their child the way he is and not strive to always believe that one day he or she will be “normal.” As firm believers in nisim, we are also firm believers in being honest with ourselves and have strived to have reasonable expectations of what to expect in the future from Naama. We were not looking for nor did we pursue a miracle. Striving to involve children who are “special” in more and more regular, everyday activities in which their disability is accentuated can only do more harm to the child than good. We believe this to be the case of both a 5-year-old and 25-year-old.
We have seen too many families in denial about their child’s disability. We are very familiar with a family whose son was diagnosed with Williams syndrome as an infant. One of the characteristics of this disorder is over friendliness and an extreme desire to be involved in social encounters. This young man was told by his parents that he would get married as soon as his other siblings were married. He honestly believed them. Every time we would see him he would mention to us that he was going to get married. How sad was the day when they told him that this was never going to happen. Giving children the impression that they are going to be like everyone else is one of the greatest crimes that a family can do to a child. Until the day that everyone recognizes the need to be honest with themselves and their child there cannot be peace in the daily challenges of their everyday life.
When the phone rings and we hear that familiar voice on the other end of the line, we grimace and smile, knowing that our daughter is doing what she knows how to do best—connecting with her family and hearing their voices; for her, this is what her world is about and she loves her life.
By Rabbi Mordechai and Nina Glick
